Re: New member - surgery - now or later for 8-year-old boy?

[Guest guest]

Try to get it done as soon as possible. The ctoma will continue to grow and do damage.

-----Original Message-----From: beebogoat [mailto:beebogoat@...]Sent: Tuesday, August 26, 2003 11:07 PMcholesteatoma Subject: New member - surgery - now or later for 8-year-old boy?I am new to this board and NEED advice from those who have been this route. My son is nearly 8 years old. He has a c-toma in one ear. There is no infection with it. Dr. says c-scan looks ok. There isn't any noticable change. Yet, his hearing is getting a little worse in that ear. The Dr. has left it up to us to decide to do surgery now or recheck in 6 months to a year. Is it better to wait until it is larger or get it out while it is small? Is it worth opening up before absolutely nessesary. From what I've read it may not improve his hearing to operate. Yet, I wonder if it should be removed BEFORE it has the chance to grow and cause damage.Any opinions will be greatly appreciated!send to my email. thanks!

[Guest guest]

Hi...

My feeling would be to get it done sooner rather than later. The ctoma does grow and has more chance of infection.

I left mine for a few years, although I was not informed of what it was until I went back to ENT this year. Anyway in my case I had not had a check up for the last 4 years and eventually went back due to feeling 'off balance'. Apparently the ctoma had grown and destroyed all my hearing bones and overtook my middle ear which can happen. Fortunately a CT scan showed no damage to the skull bone. I am now awaiting surgery - hopefully in the next month or so.

My main advice would be not to put it off and,although it's not nice, to get it seen to as soon as you and your son are able to. Not sure what anyone else will advise!

Love

I am new to this board and NEED advice from those who have been this route. My son is nearly 8 years old. He has a c-toma in one ear. There is no infection with it. Dr. says c-scan looks ok. There isn't any noticable change. Yet, his hearing is getting a little worse in that ear. The Dr. has left it up to us to decide to do surgery now or recheck in 6 months to a year. Is it better to wait until it is larger or get it out while it is small? Is it worth opening up before absolutely nessesary. From what I've read it may not improve his hearing to operate. Yet, I wonder if it should be removed BEFORE it has the chance to grow and cause damage.Any opinions will be greatly appreciated!send to my email. thanks!

[Guest guest]

Get a new doctor (an otologist) and do it now!! My eight year old son had his surgery about 3 weeks ago. Although he could still hear with his c-toma ear his hearing was not as good as his other ear. C-toma does nothing good while you wait. C-toma will destroy bone. The two small bones in my son's ear were surrounded by the C-toma and had degenerated so far that they had to be removed and replaced with artificial bones. Our otologist didn't give us an option to wait, and I'm thinking yours shouldn't have either.

Steve T., dad of

Austin, MN

New member - surgery - now or later for 8-year-old boy?

I am new to this board and NEED advice from those who have been this route. My son is nearly 8 years old. He has a c-toma in one ear. There is no infection with it. Dr. says c-scan looks ok. There isn't any noticable change. Yet, his hearing is getting a little worse in that ear. The Dr. has left it up to us to decide to do surgery now or recheck in 6 months to a year. Is it better to wait until it is larger or get it out while it is small? Is it worth opening up before absolutely nessesary. From what I've read it may not improve his hearing to operate. Yet, I wonder if it should be removed BEFORE it has the chance to grow and cause damage.Any opinions will be greatly appreciated!send to my email. thanks!

[Guest guest]

Get it removed as soon as possible. Shop around for an otologist who

specializes in pediatrics (they are out there), and take the CT scan

results with you when you see the doctor. Also take a copy of your

current ENT's records when going for a consultation (this will help the

new doctor form an opinion - something I wish I'd thought of when I was

getting second opinions for my 4-year-old daughter).

C-toma doesn't get better or go away, but if caught early enough the

impact can be minimized. Also, depending on the size and position of

the c-toma, it's possible that the surgery can be performed through the

ear canal, which minimizes the trauma and leaves no visible scarring.

My daughter's procedure was done through the ear canal, and she was back

to being herself within hours of the surgery, with only some minor

burning when we put the prescribed ear drops in. 4 weeks post-op, she's

doing fine. On the other hand, my c-toma was diagnosed about the same

time as your son's, but had progressed to the point where it had

destroyed 2 of the 3 bones of hearing, and lead to 7 further surgeries

to attempt to reconstruct hearing - none of which worked completely. I

now wear a hearing aid in that ear, and have 65-70% of normal hearing in

that ear without the aid. Have a good-sized scar behind my ear as well,

although most people never notice it.

None of this is to say that your son will lose his hearing if you don't

act right away - every case is different. But his hearing will

certainly not get any better, and sooner or later the c-toma will have

to be removed. If I were in your position (and I have been), I would

act now and hope to avoid longer, more painful surgeries later.

Best of luck. This group has been an excellent resource to me and my

family as we've coped with 's c-toma, and it is how we found

the surgeon who performed her surgery.

-Jeff.

New member - surgery - now or later for

8-year-old boy?

I am new to this board and NEED advice from those who have been this

route.

My son is nearly 8 years old. He has a c-toma in one ear. There is

no infection with it. Dr. says c-scan looks ok. There isn't any

noticable change. Yet, his hearing is getting a little worse in that

ear. The Dr. has left it up to us to decide to do surgery now or

recheck in 6 months to a year.

Is it better to wait until it is larger or get it out while it is

small? Is it worth opening up before absolutely nessesary. From

what I've read it may not improve his hearing to operate. Yet, I

wonder if it should be removed BEFORE it has the chance to grow and

cause damage.

Any opinions will be greatly appreciated!

send to my email. thanks!

[Guest guest]

Do NOT wait. Here is what can happen in as little as 7 months. My

daughter had her 1st surgery in May 2002 to repair a ruptured

eardrum. They found a ctoma and removed it. Her hearing was fine

and she had no symptoms. A second surgery in January 2003 was

performed to make sure the ctoma had not returned. In that short

period of time, the ctoma had returned and eroded one of her hearing

bones in the middle ear. Do NOT wait -- get a second opinion NOW.

With ctoma the first priority is a clean, dry (healthly) ear and the

second priority is hearing.

Candy

> I am new to this board and NEED advice from those who have been

this

> route.

> My son is nearly 8 years old. He has a c-toma in one ear. There

is

> no infection with it. Dr. says c-scan looks ok. There isn't any

> noticable change. Yet, his hearing is getting a little worse in

that

> ear. The Dr. has left it up to us to decide to do surgery now or

> recheck in 6 months to a year.

>

> Is it better to wait until it is larger or get it out while it is

> small? Is it worth opening up before absolutely nessesary. From

> what I've read it may not improve his hearing to operate. Yet, I

> wonder if it should be removed BEFORE it has the chance to grow

and

> cause damage.

> Any opinions will be greatly appreciated!

> send to my email. thanks!

[Guest guest]

Dear Beebogoat (?)

When my son first was diagnosed three years ago the ENT recommended he

go to a specialist. We went to UCSan Francisco to a highly regarded

Otologist. He looked at Zach and told us he had bilateral

cholesteatomas but they were " stable " meaning they were not growing at

the time. He recommended that we get a hearing aide and wait it out.

We were scared to death and completely dumbfounded--Zach's hearing was

diminishing greatly, we had no idea when it would no longer be stable

but growing and we couldn't believe nothing could be done. We then

wanted another opinion so we went to the California Ear Institute at

Stanford. There I was told that by not removing the cholesteatomas as

soon as possible this could be life threatening. They said the hearing

issue was secondary but we had to remove the Cholesteatoma so it did not

do any further damage. Zach's doctor knew and respected the first

doctor we saw but could not explain why he would recommend not doing the

operation right away except to say that Zach's hearing would most likely

be worse until reconstruction was done.

Needless to say we were shocked at the two different diagnoses but today

we are very happy we chose to go with the operations--four in all which

has resulted in removal, reconstruction and almost complete return of

his hearing. My advice to you would be to get this operation completed

as soon as possible or at the very least--get a second opinion.

Good luck,

beebogoat wrote:

> I am new to this board and NEED advice from those who have been this

> route.

> My son is nearly 8 years old. He has a c-toma in one ear. There is

> no infection with it. Dr. says c-scan looks ok. There isn't any

> noticable change. Yet, his hearing is getting a little worse in that

> ear. The Dr. has left it up to us to decide to do surgery now or

> recheck in 6 months to a year.

>

> Is it better to wait until it is larger or get it out while it is

> small? Is it worth opening up before absolutely nessesary. From

> what I've read it may not improve his hearing to operate. Yet, I

> wonder if it should be removed BEFORE it has the chance to grow and

> cause damage.

> Any opinions will be greatly appreciated!

> send to my email. thanks!

>

>

>

>

>

[Guest guest]

Glad to read you're getting a second opinion

Beebogoat!

Kervin, I'm a new patient at the Stanford Ear

Institute (Dr. Roberson) I'm thrilled to hear you got

a good result.

I had an eardrum reconstruction, during the surgery

they discovered a c-toma. They are waiting for four

months to remove it, but I do feel confident in my dr.

(Roberson)

I have deteriorated ossicle bones (or bone?) and was

going to get a prosthetic bone when the c-toma was

discovered during surgery. The competence of the drs

at the Ear Institute have been the only good thing

about this. Yikes.

--- kervin <kervin@...> wrote:

> Dear Beebogoat (?)

> When my son first was diagnosed three years ago the

> ENT recommended he

> go to a specialist. We went to UCSan Francisco to a

> highly regarded

> Otologist. He looked at Zach and told us he had

> bilateral

> cholesteatomas but they were " stable " meaning they

> were not growing at

> the time. He recommended that we get a hearing aide

> and wait it out.

> We were scared to death and completely

> dumbfounded--Zach's hearing was

> diminishing greatly, we had no idea when it would no

> longer be stable

> but growing and we couldn't believe nothing could be

> done. We then

> wanted another opinion so we went to the California

> Ear Institute at

> Stanford. There I was told that by not removing the

> cholesteatomas as

> soon as possible this could be life threatening.

> They said the hearing

> issue was secondary but we had to remove the

> Cholesteatoma so it did not

> do any further damage. Zach's doctor knew and

> respected the first

> doctor we saw but could not explain why he would

> recommend not doing the

> operation right away except to say that Zach's

> hearing would most likely

> be worse until reconstruction was done.

> Needless to say we were shocked at the two different

> diagnoses but today

> we are very happy we chose to go with the

> operations--four in all which

> has resulted in removal, reconstruction and almost

> complete return of

> his hearing. My advice to you would be to get this

> operation completed

> as soon as possible or at the very least--get a

> second opinion.

> Good luck,

>

> beebogoat wrote:

> > I am new to this board and NEED advice from those

> who have been this

> > route.

> > My son is nearly 8 years old. He has a c-toma in

> one ear. There is

> > no infection with it. Dr. says c-scan looks ok.

> There isn't any

> > noticable change. Yet, his hearing is getting a

> little worse in that

> > ear. The Dr. has left it up to us to decide to do

> surgery now or

> > recheck in 6 months to a year.

> >

> > Is it better to wait until it is larger or get it

> out while it is

> > small? Is it worth opening up before absolutely

> nessesary. From

> > what I've read it may not improve his hearing to

> operate. Yet, I

> > wonder if it should be removed BEFORE it has the

> chance to grow and

> > cause damage.

> > Any opinions will be greatly appreciated!

> > send to my email. thanks!

> >

> >

> >

> >

> >

[Guest guest]

Dear Barbara,

Zach's doctor is Dr. Roberson also and I can not say enough about him. I would

follow him anywhere . So far the reconstructions have been highly successful

and Zach's hearing went from a severe hearing loss to slightly below normal

(normal in one ear). We couldn't ask for more. I am sure for you they need to

wait to be sure they have removed all of the cholesteatoma before putting the

prosthetic in place. I wish you the best of luck.

Barbara Palmer wrote:

> Glad to read you're getting a second opinion

> Beebogoat!

>

> Kervin, I'm a new patient at the Stanford Ear

> Institute (Dr. Roberson) I'm thrilled to hear you got

> a good result.

>

> I had an eardrum reconstruction, during the surgery

> they discovered a c-toma. They are waiting for four

> months to remove it, but I do feel confident in my dr.

> (Roberson)

>

> I have deteriorated ossicle bones (or bone?) and was

> going to get a prosthetic bone when the c-toma was

> discovered during surgery. The competence of the drs

> at the Ear Institute have been the only good thing

> about this. Yikes.

>

> --- kervin <kervin@...> wrote:

> > Dear Beebogoat (?)

> > When my son first was diagnosed three years ago the

> > ENT recommended he

> > go to a specialist. We went to UCSan Francisco to a

> > highly regarded

> > Otologist. He looked at Zach and told us he had

> > bilateral

> > cholesteatomas but they were " stable " meaning they

> > were not growing at

> > the time. He recommended that we get a hearing aide

> > and wait it out.

> > We were scared to death and completely

> > dumbfounded--Zach's hearing was

> > diminishing greatly, we had no idea when it would no

> > longer be stable

> > but growing and we couldn't believe nothing could be

> > done. We then

> > wanted another opinion so we went to the California

> > Ear Institute at

> > Stanford. There I was told that by not removing the

> > cholesteatomas as

> > soon as possible this could be life threatening.

> > They said the hearing

> > issue was secondary but we had to remove the

> > Cholesteatoma so it did not

> > do any further damage. Zach's doctor knew and

> > respected the first

> > doctor we saw but could not explain why he would

> > recommend not doing the

> > operation right away except to say that Zach's

> > hearing would most likely

> > be worse until reconstruction was done.

> > Needless to say we were shocked at the two different

> > diagnoses but today

> > we are very happy we chose to go with the

> > operations--four in all which

> > has resulted in removal, reconstruction and almost

> > complete return of

> > his hearing. My advice to you would be to get this

> > operation completed

> > as soon as possible or at the very least--get a

> > second opinion.

> > Good luck,

> >

> > beebogoat wrote:

> > > I am new to this board and NEED advice from those

> > who have been this

> > > route.

> > > My son is nearly 8 years old. He has a c-toma in

> > one ear. There is

> > > no infection with it. Dr. says c-scan looks ok.

> > There isn't any

> > > noticable change. Yet, his hearing is getting a

> > little worse in that

> > > ear. The Dr. has left it up to us to decide to do

> > surgery now or

> > > recheck in 6 months to a year.

> > >

> > > Is it better to wait until it is larger or get it

> > out while it is

> > > small? Is it worth opening up before absolutely

> > nessesary. From

> > > what I've read it may not improve his hearing to

> > operate. Yet, I

> > > wonder if it should be removed BEFORE it has the

> > chance to grow and

> > > cause damage.

> > > Any opinions will be greatly appreciated!

> > > send to my email. thanks!

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Oh thanks, . Actually I had the eardrum

reconstruction with just a local, so they couldn't

remove the cholesteatoma. It has to be done under

general anasthetic. So they are going to wait for four

months, but I think it's so my eardrum can heal. It

would make me a little nervous that they are waiting,

except they are continuing to monitor me and check my

hearing and I do feel confident in Dr. Roberson. I go

see him again on Sept. 5, but I am greatly heartened

by your words about the reconstructions!

--- Ervin <kervin@...> wrote:

> Dear Barbara,

> Zach's doctor is Dr. Roberson also and I can not say

> enough about him. I would follow him anywhere . So

> far the reconstructions have been highly successful

> and Zach's hearing went from a severe hearing loss

> to slightly below normal (normal in one ear). We

> couldn't ask for more. I am sure for you they need

> to wait to be sure they have removed all of the

> cholesteatoma before putting the prosthetic in

> place. I wish you the best of luck.

>

>

> Barbara Palmer wrote:

>

> > Glad to read you're getting a second opinion

> > Beebogoat!

> >

> > Kervin, I'm a new patient at the Stanford Ear

> > Institute (Dr. Roberson) I'm thrilled to hear you

> got

> > a good result.

> >

> > I had an eardrum reconstruction, during the

> surgery

> > they discovered a c-toma. They are waiting for

> four

> > months to remove it, but I do feel confident in my

> dr.

> > (Roberson)

> >

> > I have deteriorated ossicle bones (or bone?) and

> was

> > going to get a prosthetic bone when the c-toma was

> > discovered during surgery. The competence of the

> drs

> > at the Ear Institute have been the only good thing

> > about this. Yikes.

> >

> > --- kervin <kervin@...> wrote:

> > > Dear Beebogoat (?)

> > > When my son first was diagnosed three years ago

> the

> > > ENT recommended he

> > > go to a specialist. We went to UCSan Francisco

> to a

> > > highly regarded

> > > Otologist. He looked at Zach and told us he had

> > > bilateral

> > > cholesteatomas but they were " stable " meaning

> they

> > > were not growing at

> > > the time. He recommended that we get a hearing

> aide

> > > and wait it out.

> > > We were scared to death and completely

> > > dumbfounded--Zach's hearing was

> > > diminishing greatly, we had no idea when it

> would no

> > > longer be stable

> > > but growing and we couldn't believe nothing

> could be

> > > done. We then

> > > wanted another opinion so we went to the

> California

> > > Ear Institute at

> > > Stanford. There I was told that by not removing

> the

> > > cholesteatomas as

> > > soon as possible this could be life threatening.

> > > They said the hearing

> > > issue was secondary but we had to remove the

> > > Cholesteatoma so it did not

> > > do any further damage. Zach's doctor knew and

> > > respected the first

> > > doctor we saw but could not explain why he would

> > > recommend not doing the

> > > operation right away except to say that Zach's

> > > hearing would most likely

> > > be worse until reconstruction was done.

> > > Needless to say we were shocked at the two

> different

> > > diagnoses but today

> > > we are very happy we chose to go with the

> > > operations--four in all which

> > > has resulted in removal, reconstruction and

> almost

> > > complete return of

> > > his hearing. My advice to you would be to get

> this

> > > operation completed

> > > as soon as possible or at the very least--get a

> > > second opinion.

> > > Good luck,

> > >

> > > beebogoat wrote:

> > > > I am new to this board and NEED advice from

> those

> > > who have been this

> > > > route.

> > > > My son is nearly 8 years old. He has a c-toma

> in

> > > one ear. There is

> > > > no infection with it. Dr. says c-scan looks

> ok.

> > > There isn't any

> > > > noticable change. Yet, his hearing is getting

> a

> > > little worse in that

> > > > ear. The Dr. has left it up to us to decide

> to do

> > > surgery now or

> > > > recheck in 6 months to a year.

> > > >

> > > > Is it better to wait until it is larger or get

> it

> > > out while it is

> > > > small? Is it worth opening up before

> absolutely

> > > nessesary. From

> > > > what I've read it may not improve his hearing

> to

> > > operate. Yet, I

> > > > wonder if it should be removed BEFORE it has

> the

> > > chance to grow and

> > > > cause damage.

> > > > Any opinions will be greatly appreciated!

> > > > send to my email. thanks!

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

HI,

C-tomas tend to grow quickly in younger ears. As they grow they destroy. It

would seem to me it would be better to do it sooner than later. But you

should also know there tends to me more than one opertation as well. the

surgery is harder on the parents than the kids.

God bless,

Jane

>From: " beebogoat " <beebogoat@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: New member - surgery - now or later for 8-year-old

>boy?

>Date: Wed, 27 Aug 2003 03:07:11 -0000

>

>I am new to this board and NEED advice from those who have been this

>route.

>My son is nearly 8 years old. He has a c-toma in one ear. There is

>no infection with it. Dr. says c-scan looks ok. There isn't any

>noticable change. Yet, his hearing is getting a little worse in that

>ear. The Dr. has left it up to us to decide to do surgery now or

>recheck in 6 months to a year.

>

>Is it better to wait until it is larger or get it out while it is

>small? Is it worth opening up before absolutely nessesary. From

>what I've read it may not improve his hearing to operate. Yet, I

>wonder if it should be removed BEFORE it has the chance to grow and

>cause damage.

>Any opinions will be greatly appreciated!

>send to my email. thanks!

>

>

_________________________________________________________________

MSN 8: Get 6 months for $9.95/month. http://join.msn.com/?page=dept/dialup

[Guest guest]

Have them get it now if it's possible. The sooner that little beastie is out of there, the better your son's prognosis, and, if I'm not mistaken, the better his chances of retaining or even improving hearing in the affected ear.

My Otologist is confident that I will not have to have my hearing bones removed when I have my surgery. I, like your son, have cholesteatoma with no infection. However, the longer I wait (and I have to wait until November), the bigger the chance that I WILL get an infection that will cause the c-toma to grow.

So I encourage you to go ahead and have it taken care of. Above all, at least you'll have the procedure behind you quicker!

New member - surgery - now or later for 8-year-old boy?

I am new to this board and NEED advice from those who have been this route. My son is nearly 8 years old. He has a c-toma in one ear. There is no infection with it. Dr. says c-scan looks ok. There isn't any noticable change. Yet, his hearing is getting a little worse in that ear. The Dr. has left it up to us to decide to do surgery now or recheck in 6 months to a year. Is it better to wait until it is larger or get it out while it is small? Is it worth opening up before absolutely nessesary. From what I've read it may not improve his hearing to operate. Yet, I wonder if it should be removed BEFORE it has the chance to grow and cause damage.Any opinions will be greatly appreciated!send to my email. thanks!

[Guest guest]

Please don't wait!! His chances are much better to keep his hearing

if you get it done soon- My Mom didn't let me have the surgery at 16

(20 years ago) and now I have lost a good bit of my hearing and

dealing with surgey now. Plus an 8 year old child does so much

better with pain and healing then us big adults. My daughter had a

tumor removed at 7 years old and was just fine with having surgery

and being put to sleep. I know as a mother its an hard thing to see

your child be put to sleep.

Good Luck (to you and your son)

Sue M.

> I am new to this board and NEED advice from those who have been

this

> route.

> My son is nearly 8 years old. He has a c-toma in one ear. There

is

> no infection with it. Dr. says c-scan looks ok. There isn't any

> noticable change. Yet, his hearing is getting a little worse in

that

> ear. The Dr. has left it up to us to decide to do surgery now or

> recheck in 6 months to a year.

>

> Is it better to wait until it is larger or get it out while it is

> small? Is it worth opening up before absolutely nessesary. From

> what I've read it may not improve his hearing to operate. Yet, I

> wonder if it should be removed BEFORE it has the chance to grow

and

> cause damage.

> Any opinions will be greatly appreciated!

> send to my email. thanks!